On February 17th, 2016, the Secretary of the Department of Health & Human Services, Silvia Burwell, approved the addition of adrenoleukodystrophy (ALD) to the Recommended Uniform Screening Panel (RUSP), the federal list of genetic diseases recommended for state newborn screening programs.
The addition of ALD to the RUSP will expedite the process of adding ALD to state newborn screening programs. California and New Jersey can now join New York and Connecticut in screening newborns for ALD allowing for timely diagnosis and treatment. Our work has only begun, however: there are still 46 states that need to begin ALD newborn screening as soon as possible.
On behalf of Brian, Brian’s Hope and Brian’s entire family – both nuclear and worldwide – thank you for being such avid and consistent supporters of Brian’s Hope and its mission to help make this vision a reality. Let the lifesaving begin!